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Hi All,

Recently diagnosed with crohns due to an MRI and ultrasound and my doctor has given me 9mg of budesonide to take every morning because my symptoms were active but not debilitating. I've been taking it for 10 days now and I've had less diarrhoea but I still get abdominal pain and discomfort, also fatigue.

Has anyone else been on this medication and if so what are your experiences? Did it help?

Thank you 😃

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  • Edited

    Hi Sophia

    Yes I too have Crohn's in the terminal ileum diagnosed by combination of mri, stool tests for calprotectin level and blood tests highlighting I had low b12 low folate chronic iron deficiency anaemia despite healthy diet (and no obvious cause of blood loss as I'd had my periods stopped to treat endometriosis) and also my history of relentless diarrhoea despite maximum dose of Imodium, colofac buscopan and the codeine in my pain medication which should have eased it as it can lead to constipation. So I was started on questran powder which helped a bit and then like you on budesonide. The budesonide does help I have a supply here at home and my consultant gave me instructions on when how to take it and to reduce gradually as it is a steroid. I was put on 9mg too at first and alongside my other meds it helped a lot. I do have other health issues though so am reluctant to take it too long as my high blood pressure always starts giving me symptoms after a few days on it and as I'm on two tablets for high bp I have to be careful. I also had a lot of hormone treatment for my gynae problems and so have to be mindful of my bone health. The other thing I get apart from headaches whilst on it as feeling a bit low in mood and irritable.

    That said I did have to take a low dose budesonide just 1 tablet a day for a year as I have other bowel conditions microscopic colitis and diverticulitis as well as functional gut disorder. I had had a couple of admissions with pain diarrhoea and severe dehydration needing intravenous fluids for a few days so the budesonide seemed to help with reducing the inflammation. It does help my pain but I do still need the buscopan and some pain relief even when on it at times. Overall it definitely helps me and my consultant told me it has the fewest side effects out of some other medications as it acts locally so for me its used to treat both my Crohn's flareups and microscopic colitis as it can be hard to work out which is which as they have similar symptoms. I just err on the side of caution as it is a steroid but I wouldn't be without it now in fact I've just reduced it after a mild flare but lots of pain and it helped within about 24hrs. Hope I've helped a bit and hope you feel better soon.

    Take care feel free to message me if you want to ask anything.

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    • Edited


      Just wanted to add the fatigue is sometimes one if the hardest things associated with Crohn's. It can sometimes even occur when there is no active inflammation and you are in remission but I found it a lot worse prior to getting treatment for my low b12 and anaemia which I have injections and infusions for as I cannot tolerate oral iron anymore and I don't absorb b12 as its absorbed in the terminal ileum where my Crohn's is and apparently is the most common place for it. I was feeling very fatigued breathless and sleeping most of the time but feel better on the injections.

      Hope this helps...

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    • Posted

      Hi Rose,

      Thanks for your response 😃

      I only got diagnosed two weeks ago so it's all new to me still, thanks for sharing I may consider taking iron and b12 supplements to help because I haven't been able to do normal everyday stuff due to the fatigue. I think from what you're telling me the budesonide is purely for reducing inflammation and probably doesn't do a lot for the pain. Hopefully I will found out more soon when I visit my specialist but thank you for sharing!

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  • Posted

    Hello, I've been prescribed Budesonide, but only use it for flare-ups, I haven't noticed any benefits, I still have pain and bloating.

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